NIH Director Collins among those honored at National Alzheimer's Dinner

NIH Director Collins among those honored at National Alzheimer's Dinner

April 8, 2014

At the National Alzheimer's Dinner April 8, advocates, members of Congress, researchers and leaders in the fight against Alzheimer's gathered to celebrate advances in the cause to end the disease.

"We have so much to be proud of and to celebrate while we are here together this evening, including an unprecedented $122 million increase in funding for research, caregiver support, education and outreach," said Evan Thompson, National Dinner co-chair, former chair of the Association's national board and current chair of the Alzheimer's Impact Movement (AIM). "This accomplishment was driven by you and your willingness to share your personal stories with your elected officials, so they could recognize the need to push this cause forward."

Harry Johns, Alzheimer's Association president and CEO, thanked attendees for their successful advocacy efforts. "We now have hundreds of thousands of advocates around the country letting lawmakers know what they need to do," he said. "We appreciate what you do to keep them informed. What I want you to walk away from tonight is the realization that because of your work, we can truly have a world without Alzheimer's."

The Alzheimer's Association Humanitarian Award recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer's disease. This year's honoree, Sen. Jerry Moran (R-Kan.), played a vital role in the increase in Alzheimer's funding included in the 2014 federal budget.

"This accomplishment is among the most profound I have witnessed in my 16 years of advocacy, because it marks 2014 as the year that Alzheimer's research funding initiated its first step in the ramp-up to a cure," said Bob Thomas, National Dinner co-chair and AIM treasurer. "No one could have done this alone — credit belongs to Association advocates and to other key legislators in Congress. Yet, I assure you that Jerry was a true leader, providing vision with passion and, in these times, courage, to make this happen."

Moran said he was honored by the recognition but that people in the audience are the "true champions" in the fight against Alzheimer's. "I commit to you that during my time in the U.S. Senate, I will be a relentless advocate to see that Alzheimer's becomes a preventable, treatable and curable disease," he said. "But the cause has a lot less to do with me and lot more to do with you."

Moran also confirmed how vital it is for advocates to visit with lawmakers. As it turns out, Thomas himself made an impression on Moran.

"It was only when one of your advocates called on me and made your case that this issue became a priority for me," he said. "Bob Thomas was that person for me. He sought me out — and then I couldn't get rid of him."

The Alzheimer's Association Ronald and Nancy Reagan Research Award is presented annually to an individual working to find innovative approaches to Alzheimer's treatment, prevention and care. The 2014 recipient is Dr. Francis Collins, director of the National Institutes of Health (NIH), where he oversees the work of the world's largest research enterprise, spanning the spectrum from basic to clinical research.

At last year's Forum, Collins announced that he was spending $40 million from his discretionary budget to fund innovative Alzheimer's projects. According to Johns, who presented Collins with the award, Collins fulfilled that promise with the funding of important research aimed at advancing treatment and validating drug targets. In addition, Collins established the Accelerating Medicines Partnership, a public-private group bringing together government researchers with leading drug companies and nonprofits, including the Alzheimer's Association.

Collins accepted the award by confirming the deep commitment NIH has for the Alzheimer's cause — and that breakthroughs will happen only with additional funding.

"You cannot look at the human cost of the disease and not be affected," he said. "I want to assure you that we're moved by it, but we're also excited about the scientific opportunities. Alzheimer's disease is revealing its secrets, and we're not limited by ideas. We have amazing talent that is champing at the bit to solve Alzheimer's. We're limited by resources."

Collins also downplayed receiving the honor while pledging to continue living up to it.

"In all humility, I'm not sure I or my colleagues at NIH deserve to be recognized just yet," he said. "We've not cured Alzheimer's. We've not prevented a case. That's our goal, a world without this disease, and we will not rest until that has been achieved. But we need your help. We do want to live up to your hopes and expectations because they're ours, too. We're not just the National Institutes of Health — we're the National Institutes of Hope."

Sen. Edward Markey (D-Mass.) presented the Alzheimer's Association Sargent and Eunice Shriver Profiles in Dignity Award, which recognizes individuals whose actions have promoted greater understanding of Alzheimer's disease and its effects on diagnosed individuals, families and caregivers. Marshall Gelfand, his daughter Elizabeth Gelfand Stearns and The Judy Fund were honored for exemplify the leadership and devotion to fighting Alzheimer's that are behind the award's creation.

In 2003, Marshall Gelfand started The Judy Fund in the name of his beloved wife, who died with Alzheimer's in 2004. Since its inception, The Judy Fund has become the fastest-growing family fund in the history of the Association and has raised over $5 million in support of the Association's research and public policy efforts. Marshall has served on the Association's national board of directors and, thanks to his generosity and that of his family, the Gelfands are members of the Zenith Society, the Association's highest level of philanthropy.

Alzheimer's advocate Maria Shriver congratulated the Gelfands via video, commenting that her parents would be proud the family was receiving the award.

"The Gelfands have the passion, the commitment and belief that we can wipe out this disease in our lifetime," Shriver said. "My parents would be so pleased to honor a family that has the dignity, passion and determination your family has fighting on the front lines of this disease."

"Our father has shown us all what one family can do to help change the world," said Elizabeth Gelfand Stearns when accepting the award. "Our father's ultimate battle, his fight against Alzheimer's disease, is a very personal one — it's one that honors our mother and is a way to protect us: his children, grandchildren, great grandchildren and the future generations of our family. His fight is an example of leading from the heart."

The Outstanding Advocate Award was presented to Mary Gerard of New Jersey, a critical care nurse who has also worked in drug safety for the pharmaceutical industry. Gerard cared for her mother, Helen, who passed away with Alzheimer's in 2012, and has been devoted the Alzheimer's cause since becoming an advocate in 2010. She is an Alzheimer's Association Ambassador to the district of Rep. Chris Smith (R.-N.J.).

Smith said Gerard elevates Alzheimer's priorities to his staff both at home and in Washington: "By her words, by her actions and by her advocacy, Mary has helped my colleagues and I understand the impact of Alzheimer's on families and the public at large."

Gerard said that people affected by Alzheimer's are best qualified to bring the Association's messages to Capitol Hill because of their understanding of the disease and what it does to their lives and families.

"We've lived with it and dealt with it in ways people without that experience cannot imagine," she said. "It's so important to speak with our elected officials both here in D.C. and at home because no one can tell them how the disease impacts our lives like us."

Alzheimer's Association National Early-Stage Advisor Terry Berry talked about her experience with early-onset dementia. Diagnosed in 2011 at the age of 56, the energetic, organized and independent Berry went from being the person who helped everyone else to an individual who needed assistance.

"I started struggling at work," she said. "My once-perfect cursive became jumbled, and my desk was a sea of yellow Post-It notes. My once-spotless house was a mess. I received a final notice for my electric bill."

While her diagnosis was devastating, it also allowed Berry to accept her circumstances and live her best life for as long as possible. "Changing how I felt about my diagnosis empowered me to find healthy ways to deal with it," she said.

Berry concluded by asking attendees what they're willing to do for the Alzheimer's cause.

"Each of you in this room has the power to change the course of Alzheimer's. As individuals living with Alzheimer's and other dementias, we need your help. So tonight, my challenge to you is this: Ask yourself, ‘What can I do in the fight against Alzheimer's? What can I contribute?'"

Thomas brought the evening's festivities to a close by explaining what advocates need to do on Capitol Hill to help make Alzheimer's disease a national priority — together.

"Together, we will share our stories. Stories about our families, about our friends and about lives lost to this disease," he said. "Together, we will tell Congress that Alzheimer's needs action — that it has to be a fight that we get behind, together, right now. And if they don't get behind it, they will be left behind."